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10 shocking facts that show what it’s like to be a carer

Carers' Corner

Author: Parkinson's Life editorsPublished: 9 June 2016

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Many carers face issues that have a devastating and lasting impact on their emotional health. We look at the last statistics from the Meeting of the European Parliament Interest Group on Carers

During Carer’s Week we look at the invisible work carried out by carers across Europe that is often labelled a ‘labour of love’. However, carers can face emotional, social, physical, relationship, financial burden, which can erode the balance and quality of family life.

Here are 10 facts that show the harsh reality of life for carers:

1. Worry and stress mean that a third of carers lack sleep and feel depressed.

2. 36% are sole carers, and nearly half never take a break.

3. 78% would like more respite care.

4. Of those that do take breaks, only 6-8% use unpaid respite care.

5. A third say that they are at ‘breaking point’.

6. On average, 22 hours are spent on care provision per week.

7. One in five carers is unable to see anything positive in their life.

8. Four out of 10 feel that medical and care staff take them seriously.

9. The majority (88%) of carers would like more information on the longer-term development of the illness of the person cared for.

10. Nine out of 10 would want opportunities to meet and share experiences with professional carers.

However, there are positive sides to providing care as more than half of the respondents said they had discovered inner strengths, met helpful people, learnt more about themselves and became closer to their families.

Lizzie Graham, executive director of the European Parkinson’s Disease Foundation, said: “Carers are the unsung heroes, and regrettably the importance of their role within society as a whole is not always recognised or acknowledged as it should be. Data such as this is vital, and provides the evidence that carers should be valued, cared for and listened to – and that now is the time for attitudinal change.”

The report states that throughout Europe demographic developments are rapidly leading to shortages of professional carers. In many cases the choice to become a carer is not a conscious one.

To find out more about the European Association Working for Carers follow this link

IN THE NEWS

Carefully selected news stories from the international Parkinson's community.

3 weeks ago

Excess calcium in brain could cause Parkinson’s

Researchers at the University of Cambridge, UK, have discovered that excess levels of calcium in brain cells may lead to the formation of the toxic clusters that signify Parkinson’s disease. The findings, reported in the journal ‘Nature Communications’, show that calcium can influence the interaction between small membranous structures inside nerve endings, which are important for neuronal signaling in the brain, and alpha-synuclein – the protein associated with Parkinson’s disease. Dr Janin Lautenschläger, the paper’s first author, said: “This is the first time we’ve seen that calcium influences the way alpha-synuclein interacts with synaptic vesicles. We think that alpha-synuclein is almost like a calcium sensor. In the presence of calcium, it changes its structure and how it interacts with its environment, which is likely very important for its normal function.”

Jewish people with Crohn’s disease more likely to carry LRRK2 gene mutation

A scientific study has concluded that there may be a link between Parkinson’s and Crohn’s disease within the Ashkenazi Jewish community. The study’s findings, which were published in the journal ‘Science Translational Medicine’, has found that members of the population with Crohn’s disease are more likely to carry the LRRK2 mutation which is a significant cause of Parkinson’s. Lead researcher Dr Inga Peter, professor of genetics and genomic sciences at the Icahn School of Medicine, New York, US, said: “Crohn’s disease is a complex disorder with multiple genes and environmental factors involved, which disproportionately affects individuals of Ashkenazi Jewish ancestry. “The presence of shared LRRK2 mutations in patients with Crohn’s disease and Parkinson’s disease provides refined insight into disease mechanisms and may have major implications for the treatment of these two seemingly unrelated diseases.”

Could caffeine in the blood help diagnose Parkinson’s?

Blood caffeine levels could be promising diagnostic biomarkers for early-stage Parkinson’s, Japanese researchers reported in the journal ‘Neurology’ earlier this month. The study found that people with Parkinson’s had lower levels of caffeine and caffeine metabolites in their blood than people without the disease, at the same consumption rate. Caffeine concentrations also were decreased in Parkinson’s patients with motor fluctuations than in those without Parkinson’s. However, patients in more severe disease stages did not have lower caffeine levels. The study’s authors, Dr David Munoz, University of Toronto, and Dr Shinsuke Fujioka, Fukuoka University, suggested that the “decrease in caffeine metabolites occurs from the earliest stages of Parkinson’s.” They added: “If a future study were to demonstrate similar decreases in caffeine in untreated patients with Parkinson’s […] the implications of the current study would take enormous importance.”